Tagged with: advocate awareness diagnosis disabilities disability goals life
Michael J Fox, once known to millions of Americans as Marty McFly or Alex P. Keaton is now known all around the world as “The Face of Parkinson’s Disease” and “The Incurable Optimist.”
Fox was diagnosed with Parkinson’s disease in 1991, but did not disclose his condition to the public till 1998. He sincerely believes that he puts a face on the disease. He understands the power that he holds being famous, having this disease and what that can do for people.
However, it took a certain enlightening experience for Fox to discover this power. He speaks of a time, not long after he first disclosed his condition, about receiving an email from a small towm woman. She would go into her local store, and she always assumed that the person behind the counter thought she was drunk because she had erratic movements until one day she went to the store and said to the clerk, “I have Parkinson’s.” and he said, “Oh, like Michael Fox!”
Fox says that it was at that moment he was touched and realized the opportunity that lay before him. If individuals can relate to someone like him with Parkinson’s the patient experience will no longer be such a lonely one.
Despite, his inspiring optimistic views of acceptance, he wasn’t always that way. Although Fox denies ever feeling resentment about his diagnosis he admits to a long period of denial and concealment. When doctors first suggested to Fox that he had Parkinson’s his initial reaction was not the normal “Why me?” but instead his reaction was “It isn’t me.” He thought he was too young and his “life had been so charmed up to that point”, so Fox sought out 2nd and 3rd opinions. About 2 or 3 years after his initial diagnosis he just woke up one day and “got it.” He accepted it and felt as though, it is what it is.
“Happiness grows in direct proportion to your acceptance and inverse proportion to your expectation.”
In his eyes, once you learn to accept something it is fixed in space, and then you have the ability to move all around it. The only choice he doesn’t have is whether or not he has Parkinson’s, but how he reacts to it is his choice. Now, he has adopted a lot of freedom to discover in areas where he would otherwise not found himself in. He believes Parkinson’s has really changed his life and “believe it or not in a positive way.”
Despite his current circumstances the famous actor has played a few rolls in animated movies as voiceovers, but occasionally likes to reminisce about his old acting days.
“At any given moment I can flip through a channel and see myself and for a long time it was like I stumbled on an infomercial and I’d just keep clicking, but now every now and then I’ll stop and watch a little bit and just enjoy it for what it is and the time it was in my life. There is no wishfulness. There is no longing.”
Fox views Parkinson’s as a detour. He wouldn’t have planned or designed his life this way, but it has led him to different places and different people. He admits that he enjoyed his work as an actor and making people laugh, but now he feels as if he is doing so much more.
“I can make a difference in people’s lives through advocacy and supporting research and putting a face on a situation that’s difficult for a lot of people. I feel like if I can lessen or erase those feelings that’s the kind of privilege that few people will get. It’s certainly bigger than being on TV every Thursday night for a half an hour.”
Fox has made it clear that he doesn’t even worry about his prognosis. He believes there is no sense in worrying about something you can’t control or predict anyway. There is no predictable path for Parkinson’s. There is no point on the journey where you get to a place where it triggers different options. It’s a day to day thing.
He often tells his wife, “It’s just like being in the moment. There’s no more important moment than right now. If you get caught up in the worst case scenario and it doesn’t happen you’ve wasted your time. If you get caught up in the worst case scenario and it does happen you’ve lived it twice. It’s ok to be prepared, to be informed, and to know what the future may bring, but it’s also important to celebrate right now. What you can do right now. “
Fox went from actor to activist. He has been campaigning with politicians backing stem cell research which might offer hope to Parkinson’s sufferers. One politician once said referring to Fox, “I believe democrats have a long history of using victims of various things as political spokespeople because they believe they are untouchable, and immune to criticism.” Fox’s response was, “He used the word victim. No one in this position wants pity. We don’t want pity. I’m not a victim. I think I’m in this situation along with millions of other American’s and we have the right that if there are answers out there, to pursue those answers with the full support of our politicians…Cures just don’t fall out of the sky. I always just assumed there was a department of cures, a minister of cures, a secretary of cures, but there isn’t. There’s only us.”
Fox views Parkinson’s as a gift in his life, “a gift that keeps on taking.” He has said that it has opened him up to be a more compassion, curious, risk taking person and it has given him the Michael J Fox Foundation which he believes is the most amazing and probably will be the most incredible thing he’ll ever do in his life.
This remarkable man truly believes his diagnosis was an opportunity in disguise.
Check back Friday July 29, 2011 to read about Christopher Reeve and his opportunity in disguise.